Does anyone else have MGUS?

@karencan2025 Yes, waiting to see what the cancer center has to say can be very anxiety provoking! But as you have said, until things are figured out there's no sense in getting to upset. Our minds sometimes want to go right to the worst case scenario. But I'll bet that no matter what the outcome is, you got this. There is a lot of information available not only here, listening to members' stories, but also sites like the International Myeloma Foundation myeloma.org

I will be most curious what everything points to after all the testing, and I hope you will come back and let us know.
Ginger

We have an update, although more diagnostic have to be run to fully confirm things, followed by a treatment plan. I guess there are different sorts of monoclonoal proteins, and I know so little about them. But according to the hematologist, the ones he has indicated non-Hodgkin's lymphoma. It's a very rare variant called Waldenstrom's macroglobulinema (4-6 per million people are diagnosed with it.) There appears to be some link between this disease and myeloma but I hope that won't be the case. So I guess we go from here, and I can just hope that treatment will be successful. Thanks again for the support.

Agree there is no link established (yet) with any known cause for MGUS, but human nature is to try to do what we can to feel in control vs feeling helpless.
I have questioned links with vaccines, weight/diet and stress levels (chronic and/or acute trauma).
I had to have the rabies series shots and immunoglobulin treatment recently (tried to pet a stray dog in Turkey that bit me!) and m protein remained too low to detect. But FLCs went up. Will recheck in May but maybe it will return to baseline.

Also, I have discovered a connection between stress and FLCs and found it does increase during physical and psychological stress. I experience increased thirst and slight bubbles in my urine that last a few hours before returning to normal when I feel anxious or stressed about something.
I try to be more aware of my stress response and include relaxation practices- hope this was helpful!

@leslie2121

Could you please share how your FLC ratio changed after the rabies? I am doing the shots but am really worried about the long term implications for my MGUS. Did it return to normal? Remain elevated?

My exposure was low risk so the shots aren't absolutely necessary. But I need to decide urgently whether to take them. Would be very grateful if you could share.

Hello!
I don’t know the effect on my FLCs - they have increased slightly but the M-spike has remained “not clearly identified “. I am lambda elevated w kappa with in normal range & still wnl ratio.
I worried it would affect it all but didn’t think I could risk rabies as it’s almost 100% fatal.

I am hoping it stays “dormant “. On yearly labs & appointments now. Doctor doesn’t think the FLCs are related to mgus but maybe autoimmune? Nothing appears active currently so not going to go digging as I am 66 and living my life!
Good luck to you! 😊

Thank you so much @leslie2121 for replying! So your experience was that FLCs went up slightly after the shot and didn't come back down even after multiple months?

Mine is a light chain only MGUS, so FLC is the main issue.

In your case it was a dog in a foreign country so you absolutely made the right call.

Mine is a scratch from a squirrel so they doctors aren't really pushing the rabies shot, they're letting me decide either way. Squirrels are considered a very low risk for rabies. But I wanted to see if it would flare the MGUS since it's 4 shots and IG to decide if that risk was worth it.

What a choice - rabies or myeloma! 🙂

Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for something else and my Rheumatologist informed me that I had a protein in my blood that concerned her. She referred me to a Hematologist who ordered tons of lab work, results showed that I have Mgus. I don't have a clue about Mgus and how it works, what it means, what to do next, etc, etc. All I know is that she wants to check my blood every six months. I need more information on this condition because she really didn't go into detail about symptoms or other things that I should look out for, if I should be concerned or not, so I really don't know what I have. I want to go on YouTube to see if I can learn more about Mgus. Whatever you learn, please share it with us. I would deeply appreciate that!

Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for something else and my Rheumatologist informed me that I had a protein in my blood that concerned her. She referred me to a Hematologist who ordered tons of lab work, results showed that I have Mgus. I don't have a clue about Mgus and how it works, what it means, what to do next, etc, etc. All I know is that she wants to check my blood every six months. I need more information on this condition because she really didn't go into detail about symptoms or other things that I should look out for, if I should be concerned or not, so I really don't know what I have. I want to go on YouTube to see if I can learn more about Mgus. Whatever you learn, please share it with us. I would deeply appreciate that!